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The Launch of the European Patients' Academy on Therapeutic Innovation in the Netherlands: A Qualitative Multi-Stakeholder Analysis.

ABSTRACT: Background: Involving patients' representatives in the research and development of medicinal products (medicines R&D) leads to better medical treatment. In 2014, the European Patients' Academy on Therapeutic Innovation (EUPATI) was started with the goal of increasing the capacity and capabilities of patient representatives in this field. To make this academy more accessible and applicable for the Netherlands, a Dutch version was launched in September 2019. To explore the options for a durable infrastructure for organizing the Dutch EUPATI course, a multi-stakeholder qualitative study was done. The views of various stakeholders from pharmaceutical industry, governmental organizations, patient organizations, and the academic world were examined about the benefits and challenges of this course for patient involvement in medicines R&D. Methods: From April to June 2019, 10 semi-structured interviews were completed, each with two representatives of all stakeholders involved. In addition, individual Dutch graduates of the European EUPATI (EUPATI fellows) were consulted via an e-mail questionnaire. Using a directed content analysis based on the Business Canvas Model, the transcribed interviews were coded, analyzed, and final attributes consolidated. Results: The semi-structured interviews and completed questionnaires explored how the stakeholders are aiming to assist patient involvement in medicines R&D through the Dutch EUPATI course. The building blocks of the Business Canvas Model were described with concrete attributes for making the business case. Stakeholders stated that the Dutch EUPATI course was an incentive for patient involvement in medicines development, for patient-oriented research and outcomes, for the availability of patient representatives (expert ones in particular), and for the content and representation quality of patient representatives. The key values for collaborating in the network as mentioned by the stakeholders were neutrality, patients' interests, equality, independence, shared objectives, long-term commitment, transparency, understanding, trust, and respect. Conclusions: Patient involvement in medicines R&D is evolving and the demand for qualified patient representatives is growing. Dutch stakeholders confirmed the added value of the patients' academy and expressed their willingness to contribute. Important values and conditions for long term collaboration were formulated.

SUBMITTER: van Rensen A

PROVIDER: S-EPMC7533595 | biostudies-literature | 2020

REPOSITORIES: biostudies-literature

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The Launch of the European Patients' Academy on Therapeutic Innovation in the Netherlands: A Qualitative Multi-Stakeholder Analysis.

van Rensen Annemiek A Voogdt-Pruis Helene R HR Vroonland Eva E

Frontiers in medicine 20200911

<b>Background:</b> Involving patients' representatives in the research and development of medicinal products (medicines R&D) leads to better medical treatment. In 2014, the European Patients' Academy on Therapeutic Innovation (EUPATI) was started with the goal of increasing the capacity and capabilities of patient representatives in this field. To make this academy more accessible and applicable for the Netherlands, a Dutch version was launched in September 2019. To explore the options for a dur ...[more]

PMID: 33072776

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Project description:BackgroundDecisions to adopt a particular innovation may vary between stakeholders because individual stakeholders may disagree on the costs and benefits involved. This may translate to disagreement between stakeholders on priorities in the implementation process, possibly explaining the slow diffusion of innovations in health care. In this study, we explore the differences in stakeholder preferences for innovations, and quantify the difference in stakeholder priorities regarding costs and benefits.MethodsThe decision support technique called the analytic hierarchy process was used to quantify the preferences of stakeholders for nine information technology (IT) innovations in hospital care. The selection of the innovations was based on a literature review and expert judgments. Decision criteria related to the costs and benefits of the innovations were defined. These criteria were improvement in efficiency, health gains, satisfaction with care process, and investments required. Stakeholders judged the importance of the decision criteria and subsequently prioritized the selected IT innovations according to their expectations of how well the innovations would perform for these decision criteria.ResultsThe stakeholder groups (patients, nurses, physicians, managers, health care insurers, and policy makers) had different preference structures for the innovations selected. For instance, self-tests were one of the innovations most preferred by health care insurers and managers, owing to their expected positive impacts on efficiency and health gains. However, physicians, nurses and patients strongly doubted the health gains of self-tests, and accordingly ranked self-tests as the least-preferred innovation.ConclusionsThe various stakeholder groups had different expectations of the value of the nine IT innovations. The differences are likely due to perceived stakeholder benefits of each innovation, and less to the costs to individual stakeholder groups. This study provides a first exploratory quantitative insight into stakeholder positions concerning innovation in health care, and presents a novel way to study differences in stakeholder preferences. The results may be taken into account by decision makers involved in the implementation of innovations.

Project description:Highlights • The OIS concept can be used to analyse multi-actor co-innovation partnerships.• Co-innovation partnerships in agriculture and forestry occur in many forms.• Often based on existing networks, they mobilise complementary forms of knowledge.• ‘Outreach’ practices to foster dialogue with a ‘larger periphery’ are commonly used.• The ‘enabling environment’ affects the performance of the co-innovation partnership. Innovation rests not only on discovery but also on cooperation and interactive learning. In agriculture, forestry and related sectors, multi-actor partnerships for ‘co-innovation’ occur in many forms, from international projects to informal ‘actor configurations’. Common attributes are that they include actors with ‘complementary forms of knowledge’ who collaborate in an innovation process, engage with a ‘larger periphery’ of stakeholders in the Agricultural Knowledge and Innovation System (AKIS) and are shaped by institutions. Using desk research and interviews, we reviewed, according to the Organisational Innovation Systems framework, the performance of 200 co-innovation partnerships from across Europe, selected for their involvement of various actors ‘all along the process’. Many of the reviewed partnerships were composed of actors that had previously worked together and most interviewees believed that no relevant actors had been excluded. In almost all cases, project targets and objectives were co-designed to a great or some extent, and the mechanisms applied to foster knowledge sharing between partners were considered to be very effective. Great importance was attached to communication beyond the partnership, not simply for dissemination but also for dialogue, and most interviewees evaluated the communication/outreach performance of their partnership very highly. Most partnerships received external funding, most did not use innovation brokers during the proposal writing process and two thirds had access to information they needed. We discuss the implications of these findings and question whether the AKIS concept as currently interpreted by many policy makers can adequately account for the regional differences encountered by co-innovation partnerships across Europe.

Project description:Toxicities after chimeric antigen receptor T cell (CAR-T) therapy are well known, yet the patient experience during and after CAR-T therapy has not been well described outside of the trial setting. We explored the patient experience after CAR-T therapy to inform the patient-reported outcomes (PRO) measurement approach for the Center for International Blood and Marrow Transplant Research (CIBMTR). We recruited (1) adult patients diagnosed with a hematologic malignancy 14 days to 6 months after receiving a commercial CAR T cell product who had agreed to be contacted by the CIBMTR, (2) caregivers of those patients, and (3) clinical experts in CAR-T therapy. Telephone interviews were conducted following a semistructured guide that included open-ended questions about symptoms and functioning. We conducted a systematic content analysis of each transcript using prespecified codes representing common domains of health, as well as open coding for emergent themes. Forty patients at 29 centers, 15 of their caregivers, and 15 experts from 9 centers participated, representing diversity with respect to age, sex, race/ethnicity, and years in practice (experts). Patients, caregivers, and experts shared largely consistent impressions of the patient experience after CAR-T therapy. Commonly described themes included anxiety, cognitive dysfunction, depression, fatigue, pain, impaired physical function, gastrointestinal symptoms, sexual dysfunction, sleep difficulties, need for support, financial impact, hospitalization, communication with healthcare providers, and the COVID-19 pandemic. Limitations in patients' ability to participate in social roles and activities was the most prevalent theme, found in nearly all interviews. In the setting of CAR-T therapy, a multidimensional approach to PRO measurement is needed that includes physical, mental, and social health, as well as the financial impact of this novel treatment. High-quality existing PRO tools are available to measure these concepts. Results will inform the CIBMTR measurement of PROs after CAR-T therapy and may be applicable to other CAR-T studies that aim to represent patient experiences.

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Dataset Information

The Launch of the European Patients' Academy on Therapeutic Innovation in the Netherlands: A Qualitative Multi-Stakeholder Analysis.

Publications

The Launch of the European Patients' Academy on Therapeutic Innovation in the Netherlands: A Qualitative Multi-Stakeholder Analysis.

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